In 2018, AMEND was invited to participate in the European Reference Network for rare endocrine conditions (Genetic Endocrine Tumours Syndromes Main Thematic Group) called ENDO-ERN.
What is an ERN?
European Reference Networks (ERNs) are virtual networks involving centres of expertise (Reference Centers) across Europe in partnership with European Patient Advocacy Groups (EPAGs). They aim to tackle complex or rare diseases and conditions, that require highly specialised treatment and concentrated knowledge and resources. Rare patient cases can be discussed by a ‘virtual’ advisory board of medical specialists across different countries and disciplines in a dedicated and secure IT platform, constructed by the EU Commission specifically for ERNs. This way it is the medical knowledge and expertise that travel, rather than the patients, who have the comfort of staying in their supportive home environments.
The first ERNs were launched in March 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. 24 ERNs are working on a range of thematic issues including bone disorders, childhood cancer and immunodeficiency. Below is a very accessible video about the role of ERNs:
ENDO-ERN: Genetic Endocrine Tumours Main Thematic Group
The European Reference Network on rare endocrine conditions (Endo-ERN) aims to improve access to high-quality healthcare for patients with hormonal disorders. Endocrine conditions are often complex and require a long period of care due to chronic disease without being life-threatening. Therefore, endocrine care requires equal distribution of paediatric and adult care. Endo-ERN aims to provide this care for patients throughout their entire lives and to reduce and ultimately abolish inequalities in care for patients with rare endocrine disorders in Europe, through facilitating knowledge sharing and facilitating related healthcare and research.
Together with German colleagues, AMEND represents the patients’ voice as an EPAG for all rare genetic endocrine syndromes covered by the group within ENDO-ERN, specifically:
- multiple endocrine neoplasia disorders (MEN1, 2, 3 & 4)
- pheochromocytoma/paraganglioma syndromes (SDHx)
- Von Hippel-Lindau syndromes (VHL)
- Carney Complex (CNC)